D-Day + Two Years

Diagnosis day, it’s here again. Some days reach the level you don’t even have to say what it is. Birthdays. Holidays. Anniversaries. But not all of those anniversaries are good things. Some of them are reminders of the world turning upside down. Realizing that nothing would ever be the same. A total change in your perspective, in your life.

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Biopsy results and path from here

Treatment Update: Immunosuppressant Therapy

As I posted back in October, my transplant doctor wanted me to discontinue my chemotherapy and see if my bone marrow loss was due to it or to the cancer. I had the second biopsy on December 18th, and received the results today. The bad news is there was no change in the results following the discontinuing of chemotherapy. But the good news is there were no cancer cells in the sample, which means the MDS is not progressing to leukemia. Based on these results and other genetic testing, it appears that I have a subtype known as hypoplastic MDS.

Read moreBiopsy results and path from here

Marrow Biopsy Results

Well, it’s been a week since I got my results, and I just realized that I never posted an update. So, here it is.

I got the results Tuesday (October 3rd). We had gone up to Atlanta the night before, as we typically do with morning appointments. The 2 1/2 hour drive up is bad enough without dealing with morning rush hour as well! Plus, it gives us a chance to eat dinner at Cowfish. My taste buds gave out on me part way through, but it was still a fun experience.

We got up the next morning, had a hotel breakfast, and headed on to the doctor’s office. Thankfully this time, we were not delayed by a flat tire the way we were on the day of the biopsy. But I will say… the parking deck of Tower at Northside Hospital was NOT designed for full size trucks. Or really anything above the size of a bicycle. But that’s beside the point…

Hanging out in the consult room waiting for the doctor.

Since it’s flu season, everyone in the office has to wear masks since most of the patients are immunocompromised. Nikki got another example of why I can’t stand the masks, but it did make for a smashing photo…

So, for the actual results. The cellularity, or how the volume of the cells compares to the other components, was at 10, down from 30 when I was diagnosed. For someone my age, it should be around 70. This means, not shockingly, that the marrow is not producing enough blood cells, and what cells they are producing are malformed. That much we knew. What we didn’t know was that while my CBC levels (which are checked twice a week) had been holding fairly steady, production was down overall. There are two possible reasons for this. It could just be a normal progression of the cancer, or it could be a reaction to the chemotherapy. If it is a reaction to the chemo, it is possible that the subtype of MDS I have could be treated effectively with a different protocol. If it is progression, that would signal to go ahead with a marrow transplant.

I got a unit of blood on Monday. They took it all back on Tuesday. This isn’t even all of the vials.

So to be sure, they have discontinued my chemotherapy for three to four months and then will perform another biopsy. If the cellularity improves, they will try the new protocol. Otherwise, we will move forward with the transplant. They did say I had several matches in the database, and that is just a matter of which one could come in for the donation first. They also drew [a LOT of] labs for more bloodwork. So things are progressing, even though for now we are waiting.

So for now, we will continue the twice a week bloodwork. I’ll still be getting a growth factor injection (Arenesp) every three weeks to boost red cell production. I’ll also be getting blood transfusions as needed as I have been, and was doing prior to starting treatment. So for now, we wait and see. And as always, pray for guidance and blessing.

Another test, or why my hip hurts

Nikki and I as I was about to be wheeled down to the procedure.

This week, as if dodging Hurricane Irma wasn’t exciting enough, I also had to travel to Atlanta for a new bone marrow biopsy. This was my third. First one indicated possible MDS in November 2015, but it was such a long shot they kept looking for a cause elsewhere. I had another one in January 2016 that led to my eventual diagnosis. This one was for a more exciting prospect. This bone marrow biopsy was one of the early steps in moving forward with a transplant. There is still a long way to go, but there is progress. And, progress is exciting.

Since I had to be at the hospital at 7 AM, we went up the evening before. Had dinner at The Cowfish, which despite the mind boggling fusion of sushi and burgers, was delicious. We got up, headed to the hospital the next morning, and had a flat tire.

A flat tire. Seriously? The good news is I drove around the hotel instead of pulling straight out into traffic. As annoying as it was, we were able to deal with it in the hotel parking lot instead of on the side of the road. And y’all, I have a superhero wife too. She was out there right with me working to get it changed, and doing it quickly enough that we were only 15 minutes late for my appointment.

The biopsy went well. I was sedated, so it was much better than the second one. The only complaint I have is they didn’t use my port, which means I had to get an IV, in the hand no less. But, that is just a personal annoyance.

We’ll get the results in a few weeks, and then we will know more about moving forward with the transplant. Until then, I’m still going with the chemo, Survive and Thrive “therapy”, biweekly blood tests, and blood transfusions when I need them.

A Year Like No Other

This time last year, I was being admitted to ORMC and being prepped for surgery for an “abscess.” Twenty-one days later, most of which I had spent barely conscious at ORMC and then Emory Midtown, I had been diagnosed with Sweet’s Syndrome. It was yet another condition I, my family, and most of my medical team had never heard of. Thankfully, we were at a hospital where someone had seen it before (which is a huge feat given only a few hundred cases have ever been documented). Even after I made it home, I faced the worst depression I’ve ever endured, being unable to walk or care for myself, and continuing pain. Eventually I graduated from the wheelchair to a cane. I was able to drive again. And now I’m able to walk unassisted again.
 
Me with my wife and parents following dinner on the one year anniversary of my hospitalization leading to a diagnosis of Sweet’s Syndrome.
It has been an incredibly long year, but I am grateful for how it has brought me together with my caregivers (especially Nikki). I am grateful for caring nurses that went to extraordinary lengths (including learning the Charleston) to assist in my recovery. I never want to go through it again. But I am glad for the things I learned through the process.
 
Tonight, I went to dinner with Nikki, Mom, and Dad. We had fun. I drove us there. I walked in by myself. I ate something other than grits (which was basically the only thing I ate from August through October). And I am humbled by how blessed I am.

To the Nurses of Ambulatory Care

20160526_142240I need to brag on some folks for a bit. My entire care team has been great, but the crew at ORMC Ambulatory Care has earned a special place in my heart. No one wants to go to a hospital for a transfusion, but if you have to go through it, it is comforting to know that you have a great team behind you. All of them are great, but Kim, Erin, Angie, and LeAnn have become like family.

I’m not an easy stick; I’ve never had been. Normally, by the time the IV is started it has taken all three of them and an ultrasound machine to get it going. While my oncology team was hesitant about me getting a port, they convinced them that the access issues were serious enough to warrant it. So, as I type this, I am getting this week’s transfusion through my newly implanted (last Tuesday) port.

It takes a special kind of person to be able to work in healthcare, and even more special to be able to work with cancer patients. But it is a rare individual indeed who can make someone look forward to spending 2-4 hours in a transfusion chair, just to get to chat with them. And these nurses are a credit to their profession and to humanity as a whole.

Even though I wish it could have been at a social function, I am glad to have had the honor to meet these women. And I most certainly hope to keep in touch with them long after my days of weekly treatments are completed.